I was also diagnosed in 2012 and has surgery in 2013. I continue on meds and have many health issues still. I haven’t had a full recovery and dramatic weight loss or anything. I’m now starting to regret surgery as it has left me very limited in what I can do. I was far more mobile before. I miss my life. I’ve lost everything since having surgery!

I, too, was diagnosed with a pituitary tumor and subsequently had surgery to remove it. I still struggle day to day with many issues…word finding, comprehension, emotions. I also struggle with finding Cushings disease support groups in our area.

A simple test that measures free cortisol levels in saliva at midnight — called a midnight salivary cortisol test — showed good diagnostic performance for Cushing’s syndrome among a Chinese population, according to a recent study. The test was better than the standard urine free cortisol levels and may be an alternative for people with end-stage kidney disea […]

Your case is every similar to mine. I wasn’t a dancer but I did play multiple sports in high school and played college basketball. I saw doctor Yuen at Swedish as well and many more doctors as well. I have never got my case or my symptoms solved. Over 4 years of doctors and testing. They found I had a pituitary tumor and mildly high cortisol in my 24 hour Ur […]

Thanks for sharing your story. In February it will be 6 years since I’ve had my pituitary surgery. My health is constantly up and down as well. I was just wondering if you’re treated for depression or anxiety at all? Also, have you found any exercises or physical therapy to be helpful?

Jill wrote: 'In December 2004 my dad who had addison's for over 30 years had a triple bypass surgery 6 days before Christmas. The surgery was an amazine success and it was predicted he would be home before Christmas. Day 2 following surgery the hospital neglected to give him his steriods for his Addison's for 22 hours, which they were complete […]

A man with Cushing’s disease — caused by an adrenocorticotrophic hormone (ACTH)-secreting pituitary adenoma — who later developed metastases in the central nervous system without Cushing’s recurrence, was successfully treated over eight years with radiation and chemotherapy, according to a case report.

Cushing’s disease is a condition where a tumor on the pituitary gland produces too much of the adrenocorticotropin hormone (ACTH), which will act on the adrenal gland to make cortisol in excess.

While rare, the condition can be life-threatening, as excess cortisol is linked to an increased risk of infections and cardiovascular complications, along with an increased likelihood of obesity and diabetes.

The reasons some patients develop these pituitary adenomas are far from understood, but researchers recently found that some of these patients show mutations in the USP8 gene. These appear to increase EGFR signaling which, in turn, has a stimulatory role for the synthesis of ACTH.

But more than influencing the development of Cushing’s disease, researchers believe the USP8 mutations may also determine response to treatment.

Thus, a team in Italy examined whether patients with USP8 mutations presented different clinical features and responded differently to the standard surgical procedure, called transsphenoidal pituitary surgery.

The study included 92 patients with ACTH-secreting pituitary tumors who received surgery at the neurosurgical department of the Istituto Scientifico San Raffaele in Milan between 1996 and 2016.

“All surgical procedures were performed by the same experienced neurosurgeon, which is one of the most important factors affecting early and late surgical outcome of pituitary adenomas,” researchers explained.

Among study participants, 22 (23.9%) had mutations in the USP8 gene, but these mutations were significantly more common in women than in men — 28.7% vs. 5.3%. Researchers think estrogens — a female sex hormone — may have a role in the development of mutated pituitary tumors.

Overall, the two groups had similar tumor size and aggressiveness and similar ACTH and cortisol levels before surgery. But among those with microadenomas — tumors smaller then 10 mm in diameter — USP8-mutated patients had significantly larger tumor diameters.

But remission rates were significantly higher among those with USP8 mutations — 100% vs. 75.7%. Also, USP8 mutation carriers required steroid replacement therapy for shorter periods, despite ACTH and cortisol levels being similar among the two groups after surgery.

Among patients who entered remission, 12 (16%) saw their disease return. While more patients with USP8 mutations experienced a recurrence — 22.7% vs. 13.2% — this difference was not significant. After five years, 73.8% of UPS8-mutated patients remained alive and recurrence-free, which researchers consider comparable to the 88.5% seen in patients without the mutation.

Researchers also tested sex, age at surgery, and post-surgical ACTH and cortisol levels as possible predictors of disease recurrence, but none of these factors was associated with this outcome.

“ACTH-secreting pituitary adenomas carrying somatic USP8 mutations are associated with a greater likelihood of surgical remission in patients operated on by a single neurosurgeon. Recurrence rates are not related with USP8-variant status,” researchers concluded.

Cushing’s changes us both mentally and physically. We become forgetful. We lose strength. We become someone we don’t recognize in the mirror. We lose hair on our heads and gain it everywhere else. We’re always in pain, and we’re always sick, with no end in sight (or at least it feels that way).

Some days will be trying and seem as if nothing seems to work, no matter what you do. I promise that you’re not alone, and you will make it through those days.

Following are a list of ways to deal with post-surgery scares:

Therapy/counseling: If you can afford it, talk with a professional about your health worries and how your anxiety affects you. It takes the burden off your caregivers who don’t like to see you suffer because they care so much.

Journaling: Journaling is a therapeutic and inexpensive way to let out your worries. Documenting your anxieties can help you keep track of how your thought processes are changing. Writing out your stresses is cathartic. Give it a try — if you haven’t already.

Yoga or any light exercise: If you’re in the early stages of recovery, you shouldn’t go straight back to the gym — working out is a stressor on the body. Light yoga, such as restorative yoga, in which you practice stretching, deep breathing, and relaxation, will help your mind and body to recover. Light walks are amazing for the brain and body post-surgery.

Surgical removal of tumors in the pituitary gland of the brain remains the gold standard for Cushing’s disease treatment.

Transsphenoidal surgery (TSS) usually leads to good remission rates ranging from 68-95%, depending on the location and type of tumor, the neurosurgeon’s expertise, follow-up period, and the definition of remission.

Today, TSS consists of surgery directed through the nose to get to the bottom of the skull, where the pituitary gland is located. The tumor is reached via the nasal cavity with no need for incisions on the face.

To address the safety and effectiveness of this type of surgery for treating Cushing’s, researchers retrospectively reviewed the outcome of 71 patients who received their first TSS at Saint-Luc Hospital, Belgium, between 1996 and 2017. Patients were followed for an average of 6.8 years (82 months).

Surgeons used a type of TSS that is image-guided with the help of a microscope which magnifies the surgeon’s vision.

Remission was defined as normal fasting cortisol level, normal 24-hour urinary-free cortisol, or prolonged need for hydrocortisone replacement for one year after surgery.

Replacement therapies are sometimes needed when the pituitary is not producing enough cortisol after surgery.

In total, 46 patients out of 71 were in remission after the first surgery, 11 after the second surgery, one after the third, and one after the fourth intervention.

A successful first surgery, resulting in a one-year remission, was a positive indicator for patients, as it was associated with high final remission rates (95%).

However, if the first surgery failed, only 36% of patients achieved a final remission.

“Obtaining a lasting remission after a first TSS could be an interesting parameter to influence future therapeutic decisions [like] performing repeated surgery rather than choosing second-line therapies,” researchers wrote.

Overall, remission was achieved in 83% of patients who underwent a single or multiple TSS intervention, a recurrence rate comparable to previous reports.

Surgery was particularly successful for curing patients with macroadenomas — tumors larger than 10 mm — leading to a 92% remission rate.

Small tumors that were not visible on magnetic resonance imaging (MRI) scans were more difficult to treat, with only 71% of patients being cured. Still, such a remission rate was better than what is commonly reported for MRI-negative tumors. This is likely explained by a higher level of expertise by the surgeon.

Levels of cortisol one day after TSS were significantly lower in patients with long-term remission. However, high levels were still observed in a few patients, especially those who had Cushing’s disease for many years.

“Therefore, high cortisol levels in the postoperative early days do not always indicate persistent disease and later [cortisol] evaluation is warranted,” the researchers wrote.

Most complications from surgery were minor and transient, except for seven patients who developed diabetes. Only 8.8% of patients developed long-term failure of the pituitary gland, likely because physicians favored a less aggressive intervention plan to leave the pituitary gland as intact as possible.

However, such an approach may also explain why some patients had to undergo multiple surgeries to completely remove the tumor.

In addition, a longer duration of Cushing’s disease symptoms and higher cortisol levels before surgery could significantly predict a poorer likelihood of being cured by TSS.

“Neuronavigation-guided microscopic TSS is a safe and effective primary treatment for [Cushing’s disease], allowing high remission rates,” the researchers wrote.

In a large percentage of patients with Cushing’s disease, medical therapy effectively induces cortisol normalization, suggesting the choice may serve as a useful first-line treatment vs. surgery for some, according to findings from a systematic review and meta-analysis published in Pituitary.

Cushing’s syndrome is generally approached by removal of the adrenocorticotropic hormone (ACTH)-producing tumor in ectopic disease and by adrenalectomy in ACTH-independent disease, Leonie H. A. Broersen, MD, of the department of medicine at Leiden University Medical Centre in Leiden, Netherlands, wrote in the study background. However, medical therapy can be used to control cortisol secretion preoperatively and as a “bridge” until control of hypercortisolism is achieved by radiotherapy, whereas use of medical therapy as a first-line treatment is increasing, they noted.

“Medical treatment is a reasonable treatment option for Cushing’s disease patients in case of a contraindication for surgery, a recurrence, or in patients choosing not to have surgery,” Broersen told Endocrine Today. “In case of side effects or no treatment effect, an alternate medical therapy or combination therapy can be considered.”

Across studies, medical treatment was effective in normalizing cortisol levels in Cushing’s disease in 35.7% (cabergoline) to 81.8% (mitotane) of patients, according to the researchers. In seven studies reporting data separately for medical therapy as primary (n = 4) or secondary therapy (n = 5), researchers found medication as primary therapy normalized cortisol levels in 58.1% of patients (95% CI, 49.7-66.2), similar to the effect of medication as a secondary therapy (57.8%; 95% CI, 41.3-73.6). In studies in which at least 80% of patients with Cushing’s disease were pretreated with medication before surgery, researchers observed a preoperative normalization of cortisol levels in 32.3% of patients (95% CI, 20-45.8). Patients using medical monotherapy experienced a lower percentage of cortisol normalization vs. patients using multiple agents (49.4% vs. 65.7%), according to researchers, with normalization rates higher among patients with concurrent or previous radiotherapy.

“Importantly, medical agents for hypercortisolism can cause severe side effects, leading to therapy adjustment or withdrawal in 4.8% (cabergoline) to 28.4% (mitotane) of patients,” the researchers wrote. “These results suggest that medical therapy can be considered a reasonable treatment alternative to the first-choice surgical treatment when regarding treatment effectiveness and side effects.” – by Regina Schaffer

The resection of microadenomas — small, benign tumors in the pituitary gland underlying Cushing’s disease — could be aided by a fluorescent marker that is naturally produced by the tumor, a new study shows.

Cushing’s disease is characterized by high cortisol levels that cause debilitating physical, mental, and hormonal symptoms. The excess cortisol is caused by tiny benign tumors in the pituitary gland, called microadenomas, with a size of less than 10 millimeters.

On account of their small size, these microadenomas pose imaging challenges to physicians. Up to 40 percent of microadenomas remain undetected in the gold-standard magnetic resonance imaging (MRI).

Pituitary adenomas, however, have a characteristic that distinguishes them from the surrounding healthy tissue. They process (metabolize) a natural haemoglobin metabolite, called 5-aminolevulinic acid (5-ALA), into protoporphyrin IX (PpIX) at much higher rates — up to 20 to 50 times higher — than normal tissues.

This means that exogenous 5-ALA is taken up by the adenoma cells and rapidly metabolized into the fluorescent metabolite, PpIX, which may establish its use for fluorescence-guided resection of pituitary adenomas.

To test this, researchers incubated human-derived corticotropinoma, as well as the adjacent normal gland cells with 5-ALA. They did the same with mouse model normal pituitary cells and a mouse model pituitary tumor cell line, called AtT20.

They then analyzed the cells’ fluorescence profile by microscopy and with a technique called flow cytometry.

The analysis showed that compared to normal pituitary tissue, human-derived adenomatous cells had a significant increase of tenfold in 5-ALA-induced PpIX fluorescence intensity.

The microscopy analysis revealed that the 5-ALA localized in subcellular organelles called mitochondria.

On June 6, 2017, the U.S. Food and Drug Administration approved the use of 5-ALA (under the brand name Gleolan) as an optical imaging agent for patients with gliomas (brain tumors), as an add-on compound to assist surgeons in identifying the malignant tissue during surgery.

Now, these findings suggest that 5-ALA also may be used for fluorescence-guided surgery of microadenomas in Cushing’s disease.

“The supraphysiological levels of glucocorticoids, as seen in CD [Cushing’s disease], may enhance the 5-ALA fluorescence in corticotropinomas,” researchers wrote.